Sunday, January 22, 2012

Yesterday made one week since my little man went to heaven. And yesterday was the hardest day so far. A whole week? What have I been doing for a whole week? How in the world have I made it a whole week without kissing those sweet lips or holding those sweet fingers? I miss him more than I know how to say. I miss his face, I miss his smell, I miss everything about him and our life together. I've been trying to do normal things... I've gone to Target, I've gone to get ice cream, and I've gone to dinner with my family for my grandma's birthday. But it's hard to just "go on" and try to be normal. I feel guilty for everything I do. Nothing feels real or right. I would literally give anything in the world to have my baby back... I don't want a "normal" life. I want my life with Tripp back. I would take care of him every day, all day, for 100 years if could. My body is numb... my emotions are numb... and each day has been like a blur. And now that I don't have him here, I realize HOW MUCH my life actually revolved around him. I know that I didn't take a single minute for granted... but what I wouldn't give to have just one more day with my baby. There's just something about knowing that you can't have something, that makes you physically yearn for it. I miss him so much. I could have NEVER prepared for this... no matter how long I was given.

Nothing of Tripp's has been moved yet... not even an inch. His toys are the same, his bed is the same, the rocking chair is the same and his medicines are in the same spot. Nothing has been touched. I don't know how long it will take me... and maybe that is why I haven't been able to grieve properly (not that there is a "right" way to grieve), but maybe it's why I feel like it hasn't hit me yet... like it's not real. Like this is some kind of terrible nightmare.All I can think about and see in my head is his precious, beautiful face the last time he was in my arms.

Tripp's service was beautiful. There was an outpouring of love and support from SO many people. Most of the people that I hugged began their conversation with "You don't know me, but..." That is a true testament of the lives that Tripp has touched. For so many people that we don't even know... people who have never even met Tripp, to come out and show their support is so incredible. Thank you to those who were able to come out and support us, and thank you also to those who could not make it and showed your support from home by your prayers, lighting candles, and offering moments of silence. I could truly feel the love on Wednesday. There were people who stood on the side of the road, holding signs with words of love and support for us to see on the way to the cemetery. And businesses all over town hung red balloons in honor of Tripp. It was truly amazing to see.

I have gotten some requests from people to post my speech from the service, so here it is...

I would honestly like to tell you all that I’ve never had to think about what I was going to say at my son’s funeral, but the TRUTH is that this exact moment has played over and over in my head for the past few months. What a nightmare... having to say goodbye to your only son. I don’t know which is worse- losing a child unexpectedly, or having years to plan your goodbye, knowing that it is coming whether you are ready or not. I’ve pictured this very moment in my head... me standing here, and all of you guys gathered here for my son. But even though I’ve pictured it again and again, deep down I had hoped with my whole heart that it would never really happen. But here I am.You might think that I feel just a little bit of relief, after watching my baby suffer- day in and day out- but I don’t. I’m not relieved at all. I want him in my arms. I want to hold his sweet little fingers. I want to sing to him. I want him to smile that amazing, “melt your heart” smile. I want to spend every minute of my day taking care of him- because that’s all I know. I don’t know how to do anything else. I don’t want to do anything else. I know I will heal with time, though this hole in my heart will never, ever be filled. Every single moment for the rest of my life, will be bittersweet, because I won’t have my baby to share it with. It still doesn’t seem real. I have spent the past 2 years and 8 months living like a Tiger mom, never letting the doctors or nurses really even touch Tripp, and making all the decisions myself. And this Saturday, for the first time, I had to hand over my baby, knowing that I would never see his little face again. Having to TRUST that someone else was going to take care of him the way that I have taken care of him. But I suppose if you have to entrust your child’s life to someone else, who better than God himself, right? Over the past few weeks, we have all prayed for peace. I have prayed that God’s will be done, whatever it may be. And I can tell you that our prayers were answered. Tripp’s passing couldn’t have been more peaceful. He was in his favorite spot, in the rocking chair, in my arms, with my mother at his head. God took care of him. And he took care of us. And as far as God’s will, I think we can all look around and see what that was. Tripp has brought all of these people together in one spot, in prayer. No matter what faith you are, and no matter what you believe... right now we are gathered as a family, as Tripp’s family, and as God’s family. And we are putting aside our differences, trusting and believing that Tripp is sitting on Jesus‘ lap at this very moment, happy and healthy, looking Jesus in the face, and saying, “Look, Jesus, at what I’ve done? Aren’t you so proud of me?” I bet Jesus is proud. I know that as Tripp’s Mommy, I could never, ever feel more proud. I know that my life will never be the same because of Tripp. He is the most precious gift I’ve ever received. I hope that he will continue to change the lives of so many people even though he is now in a far better place. I hope now he will be watching over and taking care of me, because I now need all of the comfort and care I get. Thank you all for coming today. And thank you for the support that you have shown Tripp, myself, and our family. I know Tripp is smiling down on everyone here today, knowing his job here on Earth was done. And done well. May God bless you all. Thank you.

It would be impossible for me to personally thank everyone who was a part of the services on Wednesday, so I want to extend a very special THANK YOU to everyone who pitched in to help us. Everyone who brought food (which was wonderful), the beautiful flowers everyone sent, the people who volunteered their time to set-up or help clean up, and everyone else who did ANYTHING to make Wednesday (and this whole week) just a little bit easier for our family. Once again, I have THE MOST AMAZING support system, ever.

A huge thank you to all of the people who came from out of town, especially Patrice (Jonah's mom), Tim (Bella's dad), Sam, Chloe, and Marybeth Sheridan (Sam was one of the first of the EB kids to go through the Bone Marrow transplant), and also I got to meet the amazing family who are adopting Anton. I was so surprised and happy to see them there. It was SO awesome to get to finally meet so many people who you feel are already like family. I've talked to Patrice so much over the phone and through text that when I finally met her, I really felt like I knew her my entire life. She is everything I expected her to be and more. An amazing and inspiring woman. I was so glad she got to come to the house afterwards and spend some time with us. I can't wait to spend some time with her under different circumstances... not such sad ones.

Meeting Sam Sheridan was an experience that I will never forget. I wanted her to know HOW MUCH her being there meant to me. Sam is 16 years old and has Dystrophic EB. She is so beautiful. And she is so brave. Sam, her mom Marybeth, and her sister Chloe drove down from Tennessee to come to Tripp's service. I know it must have been hard on Sam. What an AMAZING young woman she is. Thank you, Sam, for letting me hug you... and thank you for being so brave. I promise you that I will fight for you, for Tripp, and for every other person with EB for the rest of my life. None of your suffering or Tripp's suffering will be in vain.

When the day of the service was over, and everyone had left our house... our family was gathered around the table, just talking about the day when my sister found this video on her Facebook page. Now, I don't know if you guys know how many times I have searched "Elmo songs" on YouTube, but I can assure you it was hundreds of times- and I had never before found this one. It's called "Little Butterfly Friend." Think it sounds perfect for Tripp? Just watch it... it's the sweetest, most perfect song ever... 1. because Elmo sings it.. and 2. because it's about one little butterfly who Elmo calls his "friend" and holds in his hand. Think this song came at the right time? The day of his funeral... Think it was my sign that I had never heard it until THAT very day? I'll take it. It's given me comfort through this past week.Thank you, Elmo. I know it wasn't written for Tripp, but it couldn't be more perfect.

Thursday, January 12, 2012

I've known for about a month now that this time wasn't one of the times that my little man was just going to "bounce back." He's too sick... sicker than he's ever been. For about 2 months now, he has been laying in the same position, and not doing much of anything. He has had major anxiety issues (which I think we FINALLY have under control, thank you God). And in the past 3 days, he has spiraled downhill even more so.

He has started to swell... (hands, feet, head, scrotum, lips, eyes... you name it). He has WELL over 4+ pitting edema in his hands, feet and head. His poor little swollen hand can't even hold his Elmo anymore (I'd rather you cut off my legs than my baby not be able to hold his best friend, Elmo). The swelling is not a good sign. It's called "third spacing." This means that water is leaking from his blood vessels and collecting in the tissue areas between his cells. This is usually caused by an electrolyte imbalance or the inability of the organs to function properly (which we think he could have both, or it could be from something else, we have no idea). Dr. Defusco came to the house yesterday. She spent about 6 hours with us. She was there through his entire bath and then stayed after to discuss things and just talk. She's so amazing- I can't say enough great things about her. Seriously, I wish every doctor cared about their patients like she does Tripp. It's very admirable.

Dr. D doesn't think Tripp has much longer to be with us. And seeing after seeing what he looked like yesterday and today, I have to agree with her. His poor, sweet body is so tired. The swelling is new- he's never been swollen like this before, ever. He can barely even muster a smile to tell us "yes" or "no." It's so sad. I'm so sad. I knew keeping him at home would be hard, and it is. But I also know that it's a decision that I will never regret.

He's throwing up with anything I put in his stomach- so she also wants me to slow down on his feeds. She thinks that at this point his little body doesn't even feel hungry. But as a Mommy, I can't make myself just stop feeding him... unless I'm doing more harm than good (which it's coming down to now). That will be a decision that I will take literally minute by minute. We ask him if he's hungry or thirsty very often... and he is still somewhat able to tell us yes or no with a little smile or a head shake.

He is SUCH a fighter... sometimes I wish he didn't think he had to fight so hard.

He's so incredibly strong.

He is also having trouble regulating his body temperature (which is a sign of the electrolyte imbalance, perhaps an overwhelming infection, and/or his immune system just shutting down). His little extremities are so cold. And his temperature has gotten as low as 93.7 degrees. That's a huge and fast change from the fevers he has been running in the past few months.

Within the past three days, I think we have finally found a pain/anxiety medicine regimen that is working for him. I can finally say that I think he is as "comfortable" as he's going to get. He is sedated enough not to constantly cry due to anxiety but is still able to hear us and know what is going on. Yesterday after his bath was the most comfortable he's looked in months. Even during bath was better considering how bad he looks and is feeling. I'm so grateful. He's been sleeping well at night and I'm not having to suction him as much because his breathing is shallow, but very easy and comfortable right now. That is specifically what I've been praying to God for every night- peace in whatever form He can give it. Now I'm not saying that it won't get worse, because I'm almost positive that it will. I don't know how long he can hold on like this. I just pray that we can keep him this comfortable until it is time for him to go to Heaven- whether that be days or weeks. And I pray for him to be able to pass as peacefully as possible- at home- in his comfort zone- with the people who love him- where he belongs.

Thank you all so much for your continued support and prayers. Please keep the prayers coming, as we need them now more than ever. If you like to pray for something specific, please pray for PEACE... for Tripp to have peace from everything causing him discomfort.

I am so thankful for my faith at this time.

I often think about moms who have lost children (or anyone who has lost anyone for that matter) who don't believe in God or in Heaven. Do they wonder where their children are? That must be the worst, most awful feeling. I'm so grateful that I am certain Tripp's soul will be in Heaven and that one day I will see him again.

"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the former things have passed away.”

-Revelation 21:4

What a promise, right? No pain, no mourning... just me and my baby boy- EB free. I can't wait until that day. I have been reassuring him that it's okay for him to go home to Heaven.

I tell him that Mommy loves him so much and that I am so, SO proud of him.

I tell him that in Heaven, he will never hurt again and he will be able to run, talk, and play like a normal little boy.

I tell him that there will never be a day that goes by that I won't miss him with every fiber of my being.

I tell him how many people (like you guys) love him and that he has done such great things just by being alive.

I tell him that I promise him that I will be the very best person I can be so that I can meet him in Heaven when it is time and give him the biggest, tightest hug he has ever had.

I tell him that he has made me a better person for the rest of my life.

Thursday, January 5, 2012

I want to first thank everyone for the encouraging comments and also all of the holiday wishes!

And also a huge thank you to everyone who sent gifts to us! You guys are amazing.

I hope every one had a great Christmas.

This Christmas was a hard one for us- as I knew it would be. When I think of what Tripp "should be" doing at 2 1/2 years old, it makes me really sad to think about all that he is missing out on. Santa Claus, opening presents, baking cookies, etc... We've never even come close to that. BUT, he is surely surrounded by LOVE, and I think that is what's most important.

This Christmas was pretty low-key for us. On Saturday (Christmas Eve), my parents went to my family's house in Lutcher, and Stephen spent the day here with Tripp and me. Then that night, my mom kept Tripp so we could visit with some of my family here. Then, me, Stephen, my brother and his girlfriend Ashley all went to midnight mass. On Sunday, Tripp's MeMe and PawPaw Carey came to visit and exchange gifts for a couple hours. And then finally, Christmas night was when Tripp was alert enough for me to open his presents for him (it was bath day, so he had sedatives in him). I could have just wrapped about 10 empty boxes, because the only part he liked was the noise when I tore open the paper. He wasn't interested in any toys I bought (which I expected... he hasn't been in to ANYthing lately). He did however, play for a few minutes with one new little music maker.

And when I say "a few minutes," that's even pushing it. Playtime has pretty much been non-existent (even on the rocker) and he hasn't stood up in about 3 months.

Bubba's days have been about the same, give or take some really bad ones. His bottom is really raw right now, so even diaper changes are dreaded and he needs extra pain and anxiety medicine for each change. And it takes him a while to settle down after they are finished.

Though he is struggling with pain and I'm trying to find the right pain regimen (which is nearly impossible when he can't speak or communicate about how the meds work or make him feel and also the fact that we have no idea how his body is metabolizing it), he is also struggling with anxiety. I think he's always "on the edge" and sort of always "expecting" that we are going to do something to him. He anticipates diaper changes and trach changes at night, so he cries and switches between me and my mom in the rocker almost every 2 minutes at night. We talk to him constantly, explaining when it's "time" and "not time" for diaper change. But I think the trust factor is gone and he doesn't trust that we mean what we say. It's horrible and sad, but I have to change him... I'm not sure how to go about fixing this anxiety issue when changing him has to be done.

I've been doing his baths earlier in the day. I try to have everything set up before he wakes up in the morning, that way I can give him his sedatives while he's still asleep and he doesn't have to wake up and be anxious all day. We just get it over with. I was waiting until late in the evenings before because I had to give him the sedatives, and I didn't want him to sleep all day after bath. But at this point, when he's just miserable all day anyway, I figured the sooner the better where he could relax for the rest of the day knowing it was over (until night time of course, when he gets anxious again). The sedatives don't even really put him out anymore anyway, they just work as an anti-anxiety for him- even at high doses. Sometimes I think my baby is super-human;)

So still, our days consist of being in the rocking chair and rocking all. day. long. Thank God I don't get "rocker-sick," because I get car sick, plane sick, boat sick, etc. ;)

What gets me through each and every day is that one line from the poem "The Brave Little Soul" that I posted previously: "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength." I have to trust that God is with him and that He is helping him bear this tremendous amount of pain, because I don't know how any child could possibly be this strong all alone. I talk with him every night... about God, about heaven, and about how Mommy will be okay (one day) if he is too tired and ready to go home to heaven.

But this kid is a fighter. Sometimes I just wish he wasn't so strong. My heart is aching for him to have some peace, however that my be.

I'm so grateful for all of the people in my life. This past year has been life-changing for me in MANY ways. I have made some A-mazing friends- friends that will last a lifetime. Friends that have been there for me through every hardship- even from a distance. These people have gotten me through the hardest time of my life. And for them, I am forever grateful.

I am also blessed to have an amazing guy in my life. I thank God every night for sending me someone who loves me and loves my son enough to face our situation head on. I am grateful that Tripp finally has a man-figure as an active part in his life (other than his Papa and PawPaw Carey). It was a scary feeling going through a bad divorce and wondering who in the world would ever want to take on a woman (a stressed out woman, might I add) who never leaves the house... but also her sick child who requires her attention 24/7? I've known Stephen since kindergarden- we went to school together until high school. But there's something about being a little older and a little wiser... it isn't until then that you know exactly what you want (especially the second time around). He came into our lives and has been exactly what I have needed. I could not have made it through this past year without him. I couldn't ask for anything more. He is wonderful, his family is wonderful, and I finally know what being happy feels like.

And guess who is in town this week...??

My sister and her husband!

We didn't get to see them for Christmas, so we are so excited to get to spend the week with them. We will do our family Christmas tonight, opening presents together and I'm sure eating a whole lot:)

They don't leave until Tuesday morning... and I'm never successful in getting them to stay longer, so I guess I'll just enjoy the days that we have!

I hope you all have a great weekend!

Thank you, as always, for the continued prayers for peace... in any form.

Tripp was born on May 14, 2009. He was diagnosed with a rare genetic skin disease called "EB." Any type of friction on his skin or mucous membranes causes blisters. They told us he would not live to be a year old. Every day he amazes us by his strength. He is a fighter and with all he has been through, he has never given up. He is the strongest person I know. Tripp wakes up each morning with a smile on his face. Every day spent with him is a blessing. God has a special plan for him. I'm just blessed to be able to witness that plan.

My name is Courtney and I am from the small town of Ponchatoula, LA. Before I became a mommy to Tripp, I worked as a nurse in geriatric/psychiatric. I loved and miss my job, but I loved being a stay-at-home mom much more. My son lost his battle with a serious skin disease in January of 2012. He took a piece of my heart with him when he left. Being his mom brought more joy into my life than I ever thought possible. Tripp taught me the true meaning of love and sacrifice and my life will never be the same.

I am remarried to the man of my dreams and I am currently trying take each day one breath at a time, thanking God for not abandoning me on this journey.

A Special Child

You weren’t like other children,And God was well aware,You’d need a caring family,With love enough to share.And so He sent you to us,And much to our surprise,You haven’t been a challenge,But a blessing in disguise.Your winning smiles and laughter,The pleasures you impart,Far outweigh your special needs,And melt the coldest heart.We’re proud that we’ve been chosen,To help you learn and grow,The job that you have brought us,Is more than you can know.A precious gift from Heaven,A treasure from above,A child who’s taught us many things,But most of all- “Real Love”